CAR-T treatment

[pollyg2016]

Does anybody have any long term experience with the CAR-T treatment? Our consultants want to discuss the treatment with my partner and from what we've read and seen the success rate is short-lived with potentially many complications. If this is what they want my partner to trial, can we refuse it?

[JeanL54]

Me again!! In Ottawa, Canada, my trial was offered to me and it was up to me to accept or not. There is then paperwork to be filled out accepting this and the risks that may come with it. I don't know what it is like there, but I don't believe they can make him take the trial.

Good luck and all the best for a treatment that works.

[Val60]

I know people that went through the CAR T treatment 2 yrs. ago and still in CR.

[pollyg2016 in reply to Val60]

What's CR?

[Val60 in reply to pollyg2016]

Complete Remission

[Val60]

Your partner is the one who will decide to participate or not in the trial. He will need to weight in on the other options (if any available and left) that are out there.

[pollyg2016 in reply to Val60]

He has had three different type of therapies which have not worked, or the remission period was very short. It's the potential lethal side effects which concerns us most with CAR-T therapy. Did the people you know have any bad side effects? How are they doing now? How long did it take before they felt any sort of "normality"? We've got a few days to make this very important decision and any help or additional information will be gratefully appreciated. Many thanks,

[Val60]

It was not an easy ride, but after that they feel pretty good. I believe by this time doctors have learned quite a lot and became better in handling the side effects.

Please feel free to send me a private message.

Thank you.